Bone Mets Thread
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Leah, praying for good news with tomorrow's scan. Positive thoughts being sent your way!
Linda, great news that L1 is arthritis. The things we can be grateful for after being given a Stage IV diagnosis. And yay for your tumor markers, that is double good news. So happy for you! I also have a CT scan for chest and abdomen on February 11th.
Carla, you seem to be handling your treatment well and I'm praying those tumor markers start dropping. It took 3 months on letrozole for mine to start to drop. Sending you healing hugs.
Deanna, we've got 25cm of snow forecast for us this weekend and it has been so cold. Can I join you in California?
Hugs to all, Annie
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Hi all,
Got through the CT scan with no problem. They only had to stab me once! Last time, it took five tries. So, I feel a little silly whining about this, but the stuff that you have to drink before the scan tastes like I think licorice-flavoured sewage would taste. It's just flat nasty. There...now I have that out of my system.
Carla - good luck with the treatment and here's sending good thoughts for lower TMs.
Leah - sending positive thoughts you way for scan results. I hope you're pleasantly surprised with good news.
Linda - I know what you mean with arthritis. It is funny to be happy about it!
Annie - good luck surviving the cold. Stay warm!
Hugs to all,
Terre
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Hello,
Terre, glad you got through your scan with little poking.
Leah, I too hope you are pleasantly surprised with good news.
I am off to my PET tomorrow trying to think positive but a little anxiety creeping in.
This is a very busy group, I read everyday and keep all of you in my thoughts and prayers.
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It seems CT scan prep varies in each location. My local imange center used to require fasging, then last June in MD Anderson I was asked to fast for 4 hours and drink the nasty solution in 2 hours, back to my local image center in October, no fasting, no nasty drink, only 2 glasses of water and get on machine right away. I wonder why so different in various centers?
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Good question Cling. My onc prescribed Mucomyst for my next scan in Feb. I have to drink that stuff the day before the scan for hydration to avoid kidney damage with the contrast injection because of kidney function blood work which goes up and down due to Aredia. This is the first time she requests that based on blood tests. Perhaps they look at the overall picture and adjust? - just a thought.
Linda
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For any of you struggling with pain that has not been helped enough by whatever you're doing, I just spotted some great information posted by Bestbird about pain meds, including a few that aren't technically for pain, but that have annectodal evidence of helping pain. You can find it here: https://community.breastcancer.org/forum/8/topic/8... Hopefully that link will work, but if not, the thread is entitled, Possible Bone mets and pain!
Just thought it might be helpful. Some of the info' is stuff I've never heard.
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This thread is quiet - I hope it means everybody is doing well?Linda
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I'm going to check that post dlb. Meanwhile I wanted to share what I heard at a pain management talk today: stage iv breast cancer is becoming a chronic illness. I'm like, yeah!
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Just checking in. This thread is quiet today. I'm off to get my infusion tomorrow. Hoping for no pain, I'm going to really slather on the emla cream. Interesting link to the other thread DLB, there were quite a few meds I had never heard of.
Hope everyone is good. Cheers, Dee
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Good luck with the scan, Teacher. And good luck with the infusion Dee. Hope the port cooperates!
Thanks for the link DLB - definitely going to read that tonight.
Still waiting for CT results; not in yet, so have to wait until Monday. Th photography class I thought I was going to take last year with Simon Woolf (the person who shot the photo Princess Kate liked best from her trip down under) was cancelled at the last minute, so now rescheduled for Sunday. Hopefully it will happen and it won't rain too much. We've had blue skies and sunshine for weeks, which has been wonderful...and now it's supposed to rain on the day of my outdoor photography class. Not worried about me, just don't want the camera to get wet.
Dune - that's great news. That's basically what my MO has been saying - that within the next couple of years, he expects this to be a manageable disease, similar to diabetes, where you just take a pill and get monitored.
I'm really tired; had to get up at 4 yesterday and fly to Christchurch for meetings, then flew back to Wellington for client meetings and cocktails after work (with the client). Got home about 9:30 pm then up at 5 this morning and a full-on (but fun) day at work. Caught up with some clients and friends for coffees/lunches, so it was a good day!
Hugs to all,
Terre
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Good morning,Very informative thread Deanna. Dee - good luck with infusion today. Wishing good results to all awaiting results.
Dune - Have you seen your onc since you got your Pet results?
PattyP - where are you? OK I hope.
Linda
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Teacher911, hope all went well with the Pet Scan, praying for good results for you.
Deanna, thanks for the informative article, I read all of it and it's very helpful.
Hey Dunesleeper, I like the sounds of that, Stage IV being a chronic illness! Just keep me going so I can see my dd's married and have children.
Dee, I hope tomorrow's infusion is completely painless for you, please let us know how you make out.
Terre, you're working very hard, just reading all that you did tired me out! Good for you being able to do it, don't think I could but I do keep myself very busy. Still praying for the best news on your CT scan.
Linda, how's the weather there? We're getting pounded with snow and extreme cold here. Not liking it one bit, between dh and myself, neither one of us can shovel the driveway. Thank God for helpful neighbors.
It's been a crazy week of appts for me and today is the first day I get to stay in and get caught up. Looking forward to it! Hope everyone is feeling well.
Hugs to all, Annie
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Annie, Woke up to a mild day -5 celcius and about 6 inches of snow. I shoveled this light snow this a.m. (not my driveway) and then went for a walk. I live in the mountains and just from my yard I have access to 10 kms of trails (not my land of course). I took my walking poles and my dog and went on those trails this morning - first time since my dx. I walked for about 1/2 hour - it was total bliss!!! I hope I shed a few pounds (wishfull thinking). I am so proud of myself this morning. But this mild weather will be short lived, freezing cold in the forecast for this week-end. Other than pain from my beautiful hardware in my hip and femur, I'm feeling good these days. Thank God for little pain breaks.Did you hear from your radio-onc?
Linda
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Linda, sounds like you had a beautiful walk. I am proud of you! I have not attempted that yes this winter. Currently -11 here but with the windchill it feels much colder. We got a few inches of really thick heavy stuff last night that neither me or dh could shovel. Thankfully a neighbor a few doors down came and snow blowed for us. His wife has triple negative breast cancer and just had all her lymph nodes removed last Friday. I had gone over to change her dressing and unclog her drainage tube which they were extremely grateful for so I think he wanted to do something for us. Just so grateful he did that for us, couldn't imagine either one of us trying to do it.
My rad onc called back on Wednesday, I thought I posted about it but maybe I didn't. He checked with my orthopedic doctor and said the x-ray looked good, didn't see any progression, that my bone scan was a waste of my time being done too soon after rads. He feels the pain is either healing, or a side effect from the rads but he's not worried. He said my tumor markers dropped again from 53 in December to 22 in January. He feels I am responding well to treatment. He said if anything he thought I would have experienced more discomfort from the Cyberknife to my L5 and rib but that's not the case. I follow up with him Feb. 18th and have my CT scan Feb. 11th.
Stay warm, the freezing cold for this weekend into next week is in our forecast too.
Hugs to all, Annie
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hey ladies. I am finely feeling better. Yea ! Last wed dr did surgery to freeze and kill 1 of the very many tumors on my spine. But this bone us causing me a lot of pain ! Waiting for recovery but def hopefull this changes things.
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Sounds great, Patty! Can you tell us more about what you had done? Freezing during surgery???
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Oh, I have so much pain today. Woke up with it. Couldn't sleep last night until taking xanax at 3. Could that be why? I have to go pick up pain meds so will be back to read all I have just jumped past in my own selfish WTF. TTYL. Damn! I see doc next week or I'd be on phone with her. Sheeeeeeeeet!
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Third day since 2nd treatment of A(Red Demon)....What a waste ....I am not used to being a couch potato this much...or in bed...This pisses me off...I can't even go to support my daughter and son in law with my grandson's (11mth) old for his MRI since they found out he has Bells Palsy...I am so sad...my boys are why I'm fighting so hard with this Disease...
I need something stronger then Zofran for my nausea...it's been miserable...talk to OC on Tuesday...when I get 3rd Treatment ...
It's sunny here...was suppose to go to my swim therapy and Jacuzzi time at 11am but feel like crap...very weak...and light headed...
This is the crap that makes me so MAD...when I can't function with daily routine or have a little enjoyment...Friends what me to come over for the Super bowl...Neither team I like...Seattle beat my Packers UGH!! and don't like the Patriots...they have won enough superbowls...and don't think they play fair...my opinion...
I got pass my melt down from hearing some of your stories of progression...I'm going to start really hard to not focus on my cancer unless something comes up...Something gotta give..here...
I love you all enjoy your day and weekend...I'll probably be on there more ...Carla
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Carla, don't wait until Tuesday! Call his office now about the nausea. Emend is one that a lot of people report is better than Zofran. Please don't try to wait it out or suffer any longer than you have to! (((Hugs)))
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Hi all,
I can't keep up with this thread....I think it's been five days since I checked and there are pages and pages of entries.... I feel like I am missing the party.
Carla - I mentioned before that I also had Red Devil chemo... I very literally didn't get out of bed for days and days and DAYS. I couldn't watch TV, couldn't read, couldn't eat, could barely talk. I think once I didn't take a shower for a week. I had no strength at all. So don't beat yourself up about not being able to do anything...and I agree with Deanna, don't wait until Tuesday to get relief - call the office now before they close. There must be something stronger they can give you. I don't remember ever feeling sick - so I can't help there - but I definitely had no appetite. The only thing I could get down was Keifer... the yogurt smoothie type drink that you can get that has probiotics...I think it helps to settle your stomach so you might try drinking that if you can. I know feeling so crappy is totally frustrating... but the good news is that that toxic chemo should work... and hopefully you will see your tumor markers going down soon. (maybe you have already and I have missed it in the thread....??) I remember that my family and friends felt helpless because I was so miserable and there was nothing they could do. Anyway - remember that we are all here supporting you! And try Keifer.. it might help...
Everyone else - I recognize some old names and see lots of new ones.... hope you all have a good, pain free, side effect free, peaceful weekend.
XO
Andrea
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Dunesleeper (and others in pain). I feel so sorry for you all and know how you feel. I often get severe pain from my bone mets, so just thought I'd share what I've found that works quite well. I'm going to predicate this by saying I'm not one to take pharmaceuticals unless my life depends on it and pain is all relative, but when it gets bad I find that methocarbamol (the drug in OTC Robax products) in combination with Voltaren emulgel works really well. Also, because I'm on a blood thinner and a heart med, I can't always use the emulgel so I often use something called kwon loong oil instead. Still not recommended with blood thinners, but less potent and it often does the trick as well. Just thought I'd throw it out there in case anyone isn't getting relief from their opioids...and for under twenty bucks you can experiment on your own without a prescription to see if it works for you. A couple of notes though, check with your pharmacist for any drug interactions with the emulgel. Its not as benign as it seems for an OTC muscle rub. Also, in Canada, at most pharmacies, for some reason the robax is not available without acetominophen added. One pharmacist told me I could just peel the green and white parts of the pill apart and take the green half for the methocarbamol. NOT the case. Both drugs are distributed throughout the pill. Color difference is just for fun. So dumb, but on the plus side, I then realized I could get away with 1/2 the recommended dose.
Hope you're pain eases up dunesleeper. It sucks.
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Deana, You are so right.. Emend is so much better than Zofran. It is much better to forestall any nausea than to chase it. Eight yrs ago during my first Txs my Onc ordered Aloxi which infused before the Adriamycin and lasted for 5 days. Great day! Carla most drug mfg. have a benevolent programfor patients who request cost help. Your onc could be of help with that process. Good luck! Peggy
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Hello Dee - Have you traveled outside Canada since your stage lV diagnosis? My DH and I are going on a vacation in a few weeks and I wondered if you knew about travel insurance. I called BCAA and I can get travel insurance for any medical issues other than related to the cancer.
I read this thread everyday and get so much from it. I'd like to thank all you amazing, strong women.
Karen
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Saw this on another thread...this is so me!
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Thank you all for your kind thoughts. The pain is more bearable now. In 2008, I was caught on fire and received lots of 3rd degree burns on my back and arm. This pain today would have been a 10 if I had never experienced that. 10 is supposed to be the worst you can imagine. I'm down to 8 or so. It only took 2 oxycontin, 3 oxycodone. 3 advil, 2 lidocaine patches, and time. I'm on the sofa, having watced a show, and am considering going up to bed for a while, perhaps to read. / Terre I think it is so great that you are taking that photography class. Don't worry about the rain. You'll get some great effects, and they should teach you how to protect your gear. It's a fantastic opportunity. / Linda, thanks for asking. I'll see my doc next week. / Dee, I hope your infusion went well today. Or is it tomorrow. In any case, good thoughts at you. / Annie, they keep threatening us with snow but we have only a dusting so far - and a bit of ice to beware of. / Linda, kudos to you on your lovely walk. / Patty, I am very glad with you that you are feeling a bit better finally. Keep on telling us about how you are doing so that maybe we can help. / Carla, I have started keeping a detailed log about my pain. Do you keep a log about how you are feeling? I'm thinking it might help the doc help us better. / Andrea, I love your post to Carla. It's so supporting and most likely very helpful. / leggo, thanks for the pain management suggestions,
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We are snowed in....I love it. Excuse to be cuddled up with a book and it's perty!! Tumor markers often go up at the beginning of Faslodex and it's REALLY IMPORTANT HOW U FEEL! My peeps tell me this all the time. I don't know what u have Syrmom...for tx...but there is a lot out there. My love and blessing to u.
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Oh Dune my heart goes out to you for having so much pain. It sucks! Did you ever have rads? Is it an option that was offered to you? Rads have helped me so much.Linda
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I went into the hospital for two days when I had tons of pain. My Onc told me a stage 4 CA pt with severe, unremitting pain is a medical emergency. I'm not going to forget that!!! That got me on the right meds and the Patriots won!,,,, deflated ,? Not I
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LOL Valerie. Enjoy being snowed in. We were expected to get some, but nothing showed up. It's too cold out there, though. So I'm going to recline here and read.
Linda, I have not had rads for pain yet. It's never been this bad, this debilitating. I'm monitoring the pain and the steps I am taking to relieve it very carefully. When I see the doctor next week, maybe she can make sense of this. I'm pretty much accustomed to the rib pain, but this. Dang. I woke up with it. All over. Maybe it's the anastrazole. I know I didn't do anything to cause it. Other than the anastrazole, the only thing I can think is that I tried to get through the night with only 1 xanax. I really wanted to try to get off of it because the horrendous nurse practitioner I have as a psychiatrist makes me feel like a druggy for taking it. She prescribed something else, which appears to be an antihistamine. It's on its way now. She said, and I quote, you can take it all you want. She really has been so nasty to me, and I just put up with it. I need to get a new one. Seriously.
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Dune - I also started tracking my pain. I noticed these past 2-3 months that the pain is horrendous the week after my Aredia infusion. Oh and my GP also looks at me as if I'm a drug addict when he looks at the meds my psychiatrist prescribes me saying you should try to stop these. No way! I take my Zoloft every day and 50 mg of Seroquel at bedtime and sleep like a baby...Linda
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